List of Tests to uncover issues that can impact tics

[Claire]

**UPDATE October 15, 2006. So many tests, below are some tests to start with... that DON'T require you getting a doctor signature**

 

PHASE I.

1. -Immunolab or ElisaAct blood tests for delayed food allergies (IgG). Elisa/ACT adds chemicals,preservatives, and molds, in addition to food. Again, directlabs.com has a related test and they provide the doctor's signature over the internet. [i recommend this one because sooo many here have food sensitivities] $250 for 90 foods.

2. www.pyroluriatesting.com Pyroluria test (creates B6, zinc deficiencies which cause other problems) $45 + shipping. IMO, pyroluria is a secondary condition, showing oxidative stress. My son's was 'cured' when we treated other issues. But it is a great indicator of something going on.

3. laboratoire Philippe Auguste (email to get kit sent at contact@labbio.net) urine test for mercury and lead toxicity. Excellent test, posted by Kim. $115 plus $2.50 normal mail to France.

4. directlabs.com DoctorsData hair test for metals (mercury, lead, arsenic, aluminum, etc) [beware of false negatives, but not false positives] $90 May not be needed if you do the urine test.

5. Directlabs.com blood test for zinc, copper, calcium, lead, iron/ferritin (some of these aren't listed, you must call and ask for Laurie x204 to order some of them...not all are listed). Hmm, I think these run about $200

6. Morning spit test at home (free) in water. Stringers floating down can mean elevated yeast. We did this on our own, but doctor said he thought it was pretty good for a screen. $0

7. Enterolab for gluten/casein $100 for gluten, ($100 for casein.) This assumes that you don't do the ElisaAct 142 foods which tests for gluten/casein reaction.

 

PHASE 2

3. Spectracell blood test for vitamin and antioxidant deficiencies Antioxidant deficiencies can highlight oxidative stress and potential metal issues. $300 if pre-paid.

7. Metametrix Organic Acid test (alternative to Great Plains OAT test for yeast, also can show low glutathione, a Key antioxidant.) $270

 

So the total for phase I would be ~$650 for phase I and $570 for phase 2. I would do phase 1 and see what you uncover, then think about phase 2. I bet we spent $20K on tests and doctors trying to figure this all out!! But for newcomers who don't know me, the treatments following these tests 'worked'. My son is doing great (no tics) and still has some food allergies though. I can't predict how much of a difference it will make for your child, but Chemar's son followed a treatment plan with great success (which I think is the top link on this site and definitely worth reading), and Kim, Alison, Carolyn, Jean and many others have done great with treatment plans also...all based on identifying immune issues and correcting them.

 

Disclaimer: As with Chemar, I feel strongly that you should have a doctor guide your supplement program. However, if you cannot find a good doctor, or while you are looking for one, or trying to decide if you really *believe* that immune issues can really cause or aggravate tics, then I see no harm in getting some of these tests done to convince yourself (or not) that there are underlying immune issues. Then bring the tests to an alternative doctor for guidance. But read, read, read, and educate your own doctor.

 

Newcomers to this board, please know that many many of us have now been finding so many common issues...just not enough to have a one size fits all solution though. That's why testing AND a doctor's direction is so important.

 

-Claire

 

-----------------------------

ORIGINAL POST

Here is the list of tests we did. Some don't need a doctor's signature. For those having a tough time finding a doctor willing to do this, you can get started, then contact a doctor if the tests are positive. For others educating their doctors, much of this is from the DAN protocal (defeat autism now), and can help with tics also. You should be able to find phone numbers on the internet.

 

Patient can do or order directly (no doctor signature required):

1. Direct Health Care Pyroluria test (creates B6, zinc deficiencies which cause other problems) $35 + $30 shipping

2. Spectracell blood test for vitamin deficiencies $265 if pre-paid

3. Enterolab for gluten/casein $99 for gluten/ $99 for yeast [we did this on our own]

4. Morning spit test at home (free) in water. Stringers floating down can mean elevated yeast. We did this on our own, but doctor said he thought it was pretty good for a screen.

5. Kim uncovered a mercury urine test...contact@labbio.net. I keep meaning to call them, I think no doctor's signature required.

 

 

"Doctor's Tests" without Doctor's signatures

www.directlabs.com, a site that Kim pointed us all to, let's you order several blood tests WITHOUT a doctor's signature, because the doctor there signs the lab slip. You take the slip to a local hospital to draw blood and send overnight (don't go on a Friday), or go to a Labcorp lab (they are national).

 

 

For me, the ones I use most there (and am about to reorder) are:

 

-DoctorsData hair test for metals (mercury, lead, etc)

-Blood test for zinc, copper, calcium, lead, iron/ferritin (some of these aren't listed, you must call and ask for Laurie x204 to order some of them...not all are listed).

-Blood test for glucose

-They also have IgG food allergy tests.

-Organic Acid test (alternative to Great Plains OAT test for yeast, also can show low glutathione, a Key antioxidant.

-Also, I found out they also have an IgG food sensitivity blood test.

 

Doctor must order--don't remember costs.

-Great Smokies CDSA stool test (yeast parasites intensional inflammation, intenstinal probiotic levels, etc..)

-Great Plains OAT urine test (for yeast/glutathione/casein/gluten issues...)

-Great Smokies blood test for Fatty acids (Omegas, etc...)

-Great Smokies blood test elemental analysis (mercury, cadmium, etcc..). Some do hair analysis for this via Doctor's data.

-Immunolab blood tests for delayed food allergies (IgG). Elisa/ACT does one for all sorts of chemicals,preservatives, and molds, in addition to food.

 

Pfeiffer clinic also has an outreach program in many cities. I think they are helpful, but they only review part of the problem. I found that I can order virtually everyone of their tests through directlabs and save a lot of $$. I don't feel that they manage patient care very well from so far away, but I like aspects of their protocol.

 

Claire

[Mustang Carole]

HI,

 

To add on here:

Great Smokies Lab does the Amino Urinalysis testing

 

Mustang Carole

[Claire]

Spartan, bumped for you.

 

Claire

[Guest Guest]

My son has had the:

 

1. CBC, chem panel, lead test, thyroid test, immune panel, viral panel and blood amino acid through Quest Lab.

 

2. Urine Amino Acids and the metal toxic profile through Doctor's Data Lab.

 

3. Fatty Acid test through Metametrix Lab

 

4. Compreshensive Stool test through Great Smokies LAb

 

5. Blood allergies test(ELISA) IGg delayed reaction and Organic Urine test through

Great Plains Lab.

 

Anne

[Claire]

bumped for Alison and coolshop

 

Claire

[Guest]

Bumped up for azhorsegal

 

Carolyn

[kim]

This test is getting quite a bit of attention on the ASD forum right now. Several parents have ordered it. What appears exciting about it, is that it will give a reading on total body burden of mercury, as opposed to a snapshot of what is being excreted during a challenge or chelation? From what I gather, the US has Porphyrin tests, but not precoproporphyrin, which is mercury specific...see foot notes. It looks like the test costs about $130.00 and around $50.00 to Fed Ex. Just a urine test!

 

 

 

You can email Laboratoire Philippe Auguste in France and request a

porphyrin test kit. Their contact info is:

 

Laboratoire Philippe Auguste

119 Avenue Philippe Auguste

75011 Paris France

e-mail: contact@...

Tel: 0033143721398

 

 

> Footnotes:

> The detection of precoproporphyrin is specifically diagnostic

for mercury toxicity (see reference 5).

> References

>

> Rowland I, ed., Nutrition, toxicity, and cancer. Boca Raton,

FL: CRC Press, 1991.

> Baker S., Detoxification and healing. New Canaan, CT: Keats

Publishing Inc., 1997.

> Chang L, Magos L, Suzuki T, eds., Toxicology of metals. Boca

Raton, FL: CRC Press, 1996.

> Fowler BA, Oskarsson A, Woods JS., Metal- and metalloid-induced

porphyrinurias. Relationships to cell injury. Ann N Y Acad Sci

1987;514:172-82.

> Woods JS, Bowers MA, Davis HA., Urinary porphyrin profiles as

biomarkers of trace metal exposure and toxicity: studies on urinary

porphyrin excretion patterns in rats during prolonged exposure to

methyl mercury. Toxicol Appl Pharmacol 1991;110:464-76.

> Keep in mind that per Dr. Boyd Haley at the CDC press conf.:

Your body reconizes all forms of mercury the same basically. So

don't let the methyl instead of ethly confuse you

[Claire]

Kim,

 

That would be terrific to have a mercury urine test that didn't require chelation. Thanks for posting this.

 

Do you know why the email address was cut off, and do you by chance have it? Or must we call?

 

Do you know if it requires a doctor's signature? Our DAN doctor retired.

 

I have to find my old Metametrix OAT test for my son that I never gave him. I hope it is still okay to send. Once I do and get it back, then I will compare notes with mine and yours (above). I haven't used that test before, so can't analyze it.

 

 

Also to others...

 

This list should be modified to include www.directlabs.com, a site that Kim pointed us all to, where you can order several blood tests without a doctor's signature, because the doctor there signs the lab slip. I added these to my top post.

 

For me, the ones I use most there (and am about to reorder) are:

 

-DoctorsData hair test for metals (mercury, lead, etc)

-Blood test for zinc, copper, calcium, lead, iron/ferritin (some of these aren't listed, you must call and ask Elizabeth to order them).

-Blood test for glucose

-They also have IgG food allergy tests.

-Organic Acid test (alternative to Great Plains OAT test for yeast)

 

 

Claire

[kim]

OPPS Claire, I didn't even notice that was missing. Here's the email address and a little more info. Also check your personal messages. It's being said that they will email you results in about 1 week. Fast and very easy to deal with this lab from what parents are posting.

 

contact@labbio.net.

 

 

 

NewScientist.com

 

* From New Scientist Print Edition. Subscribe and get 4 free issues.

 

URINE samples from hundreds of French children have yielded evidence

for a link between autism and exposure to heavy metals. If validated,

the findings might mean some cases of autism could be treated with

drugs that purge the body of heavy metals.

 

Samples from children with autism contained abnormally high levels of

a family of proteins called porphyrins, which are precursors in the

production of haem, the oxygen-carrying component in haemoglobin.

Heavy metals block haem production, causing porphyrins to accumulate

in urine. Concentrations of one molecule, coproporphyrin, were 2.6

times as high in urine from children with autism as in controls.

 

Autism is thought to have a number of unknown genetic and

environmental causes. Richard Lathe of Pieta Research in Edinburgh,

UK, says he has found one of these factors. "It's highly likely that

heavy metals are responsible for childhood autistic disorder in a

majority of cases," he claims. The study will appear in Toxicology and

Applied Pharmacology.

 

Lathe says these porphyrin metabolites bind to receptors in the brain

and have been linked with epilepsy and autism.

 

The researchers restored porphyrin concentrations to normal in 12

children by treating them with "chelation" drugs that mop up heavy

metals and are then excreted. It is not yet known whether the

children's symptoms have eased, but Lathe cites anecdotal reports

suggesting the drugs might do some good.

 

Printed on Wed Jul 12 21:26:01 BST 2006

[rcwang]

Good day. I am new to this, so please forgive the lack of knowledge. My daughter is 6 1/2 years old and we know that she has a TIC disorder and probably Tourettes (since my husbands family has a history, we know the signs). We have an appointment to see the Pediatric Neurologist (the earliest was in October). In the meanwhile, we had her take the skin scratch test. She only tested positive for dustmites, cats, and tomatoes. She tested negative for dairy, but I have had her on an elimination diet and noticed dairy makes her tic like crazy. Needless to say, I do not feel confident with the scratch test done. I am having a hard time convincing the doctors to give her these other tests. Which ones should I push the doctors for? Also, should I just do all the ones you mentioned without the doctors signature? Who will read the results for me or are they self explanatory. As a side note, the elimination diet.. do you usually see immediate results when reintroduced and is one week enough time. Thanks for any comments.

[Chemar]

bumping up for Jen Padgett

[Claire]

Thanks Chemar.

 

I updated my original post to try to add some tiering of which tests people might consider first.

 

By the way, after 6 months on Pfeiffer's MT promotion therapy, we just redid a number of tests last week. I will let you know how it goes. I really want to do Kim's new mercury urine test, because that is so tough to measure. We are doing a bunch of blood tests, and the doctorsdata hair test, but I am holding off on the organic acid test for a couple of weeks.

 

Claire

[rcwang]

Thanks so much for updating your post. We see the allergist tomorrow who seems open to the idea that allergies can affect tics. I have already noticed that her tics are aggrevated when she is exposed to certain foods and environmental things (ie. milk, tomatoes, and dust mites, msg and high sugar amounts). I will bring the list to our appointment tomorrow for the doctor to work with. Thanks so much for your help!!!

[Claire]

Good luck rcwang, I hope your visit went well.

 

We just got some of the blood test results back.

 

I am happy to note that my son's zinc is back in the normal range...6 months ago it was above range, so I cut back on the supplements, plus we did MT promotion, which pulls zinc so we needed to continue supplementation It is 117 now, and Pfeiffer likes it above 90. 150 is the upper limit. We give ~50 mg/day of zinc citrate/zinc picolinate.

 

His iron and ferritin were still in range. He had been low, and we are supplementing a lot, so I wanted to make sure that it didn't go high. Good news is that it is in range, even with the higher supplementation for a year now.

 

No mercury found (yeah!) but the lead is still at 2. Pfeiffer says it should be zero. I don't know if it is continuing exposure (which I doubt, he drinks triple filtered water), or it is still in his bones and gradually leaching from them into his system.

 

Everything else, BUN, AST, etc...was in range, EXCEPT glucose, which was low. Last time it was high. Odd, because this was to be a fasting glucose test and he ate something 2 hours before. However, I have always been convinced that blood sugar imbalances occur with him. I have seen raisons 'wake him up' from after school tiredness multiple times. In general, he rarely gets sucrose. I know that sugar issues and yeast issues go hand in hand...and suspect that yeast is still an issue. I had started Threelac and stopped (he won't take the powder and I was too lazy to pack it in capsules), but started again. He does do probiotics. Anyway, in 2 weeks I will retest his yeast. I will try to do the hair test today (to see if he is excreting mercury) and Spectracell (vitamins/antioxidants) next week. Good news, he finally, finally agreed to do the glutathione lotion again a couple of weeks ago. I hope it helps his glutathione level, as it did before.

 

Claire

[Claire]

I got the Doctor's data hair test back (last round was January 06, right before we started MT promotion).

 

First, once again I did Andy's counting rules, which showed him normal.

Mercury was normal. Hmmm, so is this good, meaning we really got it out, or does it mean that MT promotion isn't causing him to excrete it?

 

We had to redo the Spectracell antioxidant test today for the blood draw mess up. I haven't been supplementing the antioxidants he was low in, so if they by chance show normal antioxidant levels for him, then I think I can assume the mercury is probably out, because normal antioxidants would lead to excretion. Plus sometime I will redo the OAT test for low gluathione.

 

I did hear back from the mercury urine test lab that Kim posted. They are sending me the kit. However, they spoke of oxidative damage... I will need to read more, but I got the impression that it was an indirect marker. I need to go through Kim's post and see if I can understand it better.

 

Ok, other things from the hair test..by the way, this is our 5th test, ave 6 months between them:

 

Toxic Elements

1. Uranium was high. This has been high (same area) on all 5 tests! Associated with chronic fatigue. DPTA gets rid of it

2. Aluminum was high. It was also high on all but the last test. Fatigue is a symptom (which he can get for sure). It says excess Aluminum can inhibit the formation of Alpha keto glutarate. His OAT test always shows him low in that, so we supplement. Maybe this is why? Anyway, the only source I can think of is his deodorant, so it is gone now.

 

I am thinking since his issues are fatigue, and these are high, that I should focus on these, plus the blood lead. Though his hair lead was low, good.

 

Essential and other elements:

1. Magnesium was very high. Go figure, we supplement 225 mg/day. He was low in a Spectracell blood test. I just took out the mag taurate from his supplements. It will be very interesting to see if Spectracell shows him normal again.

2. Sodium/Chromium/Manganese were somewhat high. Says high manganese can lower the glutathione pool.

 

Ok, that is it. Good to know about the mercury, beginning to hope we have truly resolved it. However, I want to see his antioxidant and urine tests before I write this off.

 

Claire